A Recipe for Good Pain Research: Are Patient Perspectives the Missing Ingredient?

Editor’s note: The third North American Pain School (NAPS) took place June 24-28, 2018, in Montebello, Quebec, Canada. An educational initiative of the International Association for the Study of Pain (IASP) and Analgesic, Anesthetic, and Addiction Clinical Trial Translations, Innovations, Opportunities, and Networks (ACTTION), and presented by the Quebec Pain Research Network (QPRN), NAPS brings together leading experts in pain research and management to provide 30 trainees with scientific education, professional development, and networking experiences. This year’s theme was “To Boldly Go… : The Future of Pain Treatment.” Six of the trainees were also selected to serve as PRF-NAPS Correspondents, who provided firsthand reporting from the event, including interviews with NAPS’ six visiting faculty members and summaries of scientific sessions, along with coverage on social media. Here, PRF-NAPS Correspondent Lauren Heathcote, a postdoctoral fellow and pediatric pain psychologist in the Department of Anesthesiology, Perioperative, and Pain Medicine at Stanford University Medical School, Palo Alto, US, uses a talk by NAPS visiting faculty member Judy Watt-Watson, University of Toronto, Canada, as a springboard to discuss the role of patients in the research process.

Here’s a delicious recipe for a pain research study:

What’s the missing ingredient?

Scientific studies are often conducted for the benefit of patients, increasingly communicated to patients, and sometimes translated into the direct clinical care of patients. Yet, rarely has research been conducted with patients as part of the research team. This is changing.

No longer are patients considered merely as “human participants” from whom to gather data. Instead, patients are increasingly considered as a key part of the research process – active collaborators at every stage of study design, implementation, and dissemination. And as a word of advice to all budding health researchers out there: make sure to include patient engagement into your pain research recipes; your careers won’t last without it.

Funding bodies, healthcare organizations, and even scientific journals are starting to mandate that research be carried out “with” or “by” members of the public, rather than “to”, “about”, or “for” them. This means that health science soon won’t be funded or published without incorporating active collaboration with patients living with health conditions. In 2011, Canada set out its “Strategy for Patient-Oriented Research” (SPOR), with patient engagement as the primary guiding principle. Any time a scientist writes a grant application to this mechanism, she must include a consideration of how she will incorporate patient feedback at every stage of the proposal. The BMJ, a leading UK medical science journal, requires that all authors document in their manuscripts “if and how they involved patients in setting the research question, the outcome measures, the design and implementation of the study, and the dissemination of its results.” Across government-level and individual organizations, the patient perspective is the new cornerstone of health research.

So, what exactly is the patient perspective, and how can it be incorporated into pain research? Let’s break it down.

First, who are the “patients”? Patients have been defined as “individuals with direct experience of a health issue, and their families and caregivers.” They are people with lived experience of a health condition. They may be members of a pain advocacy group, with a good overview of the broad issues affecting people with chronic pain. They may be individuals living with persistent pain, caregivers for those individuals, or family members. They are members of the public, citizens, members of a community. They might hold a PhD themselves and be able to integrate personal experience with scientific acumen. They might have no knowledge of the research process until they join a study team. But overall, they are humans, just like you and me.

This brings me to the heart of the patient engagement movement: at its core this movement is about ethics. For decades, “the patient” has been a construct that assumes an inherent imbalance of power, in particular between the doctor providing the treatment and the person receiving it. It stems from paternalistic healthcare practices that dominated the medical field for so long. The idea that “doctor knows best” is dramatically falling out of fashion, and in its place is emerging a culture of open communication and shared decision-making. Patients are taking an active role in their treatment and healthcare decisions. They are also helping to conduct the research. These changes stem in part from technological advances, in particular the rise of the Internet and patients’ access to abundant healthcare information online. Patients are more informed than ever about their conditions, healthcare options, and ongoing research. They are no longer willing to be passive recipients of treatment and the research that informs it.

The ethics of healthcare provision, and integrating the patient voice into research, is perhaps nowhere more meaningful than in addressing the problem of pain. Pain is a ubiquitous human experience, prevalent across all ages and diversity groups. Pain management is outlined as a basic human right by the World Health Organization. Yet, pain is invisible. It is under-researched, under-funded, and under-managed. There are countless documented cases of poorly managed pain in the acute setting.

In her talk at the 2018 North American Pain School (NAPS) earlier this year, Dr. Judy Watt-Watson (see PRF related interview), a trained nurse and pioneer in the study of pain, recalled two of her recent experiences as a caregiver after surgery: one surgery was for her dog, the other was for her husband. The surgeries were similar; the pain management was not. The vet provided Watt-Watson with opioids for her dog immediately after the surgery and was informed how to begin pain relief procedures at home. For her husband, the wait for analgesia was so long that she decided to rely on over-the-counter, extra-strength Tylenol before discharge from the hospital so that he could begin recovering at home.

Beyond the acute pain setting, individuals with chronic pain have long documented stigmatization by members of the medical community. Many people living with chronic pain describe their treacherous journeys through the healthcare system, facing an experience of pain that doesn’t fit within the normal biomedical model, and in some cases feeling that their pain is discredited by their healthcare providers. Patient-centered care is essential to eradicate stigma and improve care for people living with pain.

How do we integrate patient perspectives into research? As a pediatric pain scientist beginning my third year of postdoctoral training, I admit to having almost no idea, until recently, of how to begin this process. I received no training on patient engagement during my PhD. Luckily, patient engagement is being increasingly discussed at conferences and training schools in pain science. There are also a growing number of online resources on patient engagement in health research, including in pain research specifically. At a “big picture” level, patients can be involved in setting research priorities (often a “Top 10”) that will guide funding (see here for a recent example in pediatric pain). For an individual research lab, the starting point is to identify one or more patients, or caregivers, who will work as partners throughout the research process. The key word here is “throughout” – one concern within the patient engagement movement is that patients may be included in research as a tick-box exercise. Including patient partners at the inception of study design and through to dissemination of the results is paramount to avoid this tokenism. In a recent scoping review of patient engagement in Canada, it was noted that there must also be rigorous evaluation of the benefits of patient engagement on research success, impact, and cost-effectiveness to highlight to researchers the benefits of including patient partners as more than a tick-box exercise.

This brings me back to the earlier question: who are the patients? I want to emphasize an important point, here: at some point in every scientist’s life, the patient will be him. It will be her. It will be you. Perhaps not for the specific disease one studies, but for some health experience from which we could all benefit from active and collaborative research. The eloquent Susan Sontag, in her seminal work Illness as Metaphor, said it best:

“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place”
I admit that I am a total newbie at this patient engagement stuff. But for me, the starting point is to remove the notion of “them vs. us” in health science. To not use the term “patient” as if referring to a person inherently different from ourselves. This might involve getting rid of the word “patient” altogether, emphasizing our research partners as people living with a condition, not people defined by that condition. After a decade of science training, and the prospect of soon beginning my own independent research career, I look forward to designing my own pain research recipe book with the human being as the key ingredient.